EU-US eHealth/Health IT Cooperation Initiative Interoperability of EHR Work Group

1. EU-US eHealth/Health IT Cooperation InitiativeInteroperability of EHR Work Group November 6, 2013

2. Meeting Etiquette • Participants automatically enter the webinar in “listen only” mode. The organizer will then unmute all participants. We ask if you are not speaking to manually mute yourself • NOTE: VoIP participants have the ability to “Mute” themselves by clicking on the green microphone. However, if you would like to speak, only you can unmute yourself. • If you are dialing in using a telephone and NOT using the VoIP you MUST dial the audio pin in order for the organizer to unmute you – if you do not use the audio pin and just push # when prompted the Organizer cannot unmute you

3. Meeting Etiquette CONTINUED • If you are calling from a telephone, please do not put your phone on hold. If you need to take a call, hang up and dial in again when you have completed your other call • This meeting is being recorded • Another reason to keep your phone or your VoIP on mute when not speaking • Use the “Chat” or “Question” feature for questions, comments and items you would like the moderator or other panelists to know.

4. Agenda

5. Meeting Times Washington, DC 10:00am (ET) • Due to the federal U.S. holiday (Thanksgiving Day), we will re-schedule our Thursday, November 28th webinar for Monday, November 25thfrom 10:00am - 11:00am (ET)/3:00pm - 4:00pm (GMT)/4:00pm - 5:00pm (CET)/ 5:00pm - 6:00pm (EET). Interoperability of EHR Work Group meets everyWednesday London 3:00pm/15:00 (GMT) Germany 4:00pm/16:00 (CET) Athens 5:00pm/17:00 (EET)

6. General Announcements • To participate in our weekly webinars, please visit the EU-US eHealth Collaboration Wiki Homepage: http://wiki.siframework.org/EU-US+eHealth+Cooperation+Initiative Note: Please check the meeting schedule weekly to get the most up-to-date meeting information

7. Join the EU-US eHealth/Health ITCooperation Initiative • We encourage all members to “sign up” for the initiative. By joining, this ensures you stay up-to-date with the work being done, communications and any initiative activities • Simply complete the EU-US MOU Project Signup Form on the Wiki Page: http://wiki.siframework.org/EU-US+MOU+Roadmap+Project+Sign+Up

8. Submit Your Bio • We will be creating a repository of bios to post onto the Wikipage and need your help! • Please submit a brief biography of yourself (150 words or less) that outlines your: • current professional responsibilities; • most recent projects in relation to the EU-US work stream and/or interest to work with the EU-US initiative; • areas of interest and/or expertise; • any relevant credentials and/or professional appointments; and • a photo (optional). • Please e-mail your bio and photo (optional) to GayathriJayawardena at gayathri.jayawardena@esacinc.com

9. Archived Meeting Materials • Visit the “Materials” tab and select “Past Meetings” from the drop down menu to access all archived meeting materials http://wiki.siframework.org/Project+Meeting+Artifacts.

10. Preparing for Meetings • Given our timeline and the amount of material to cover please ensure you are up-to-date with all of the activities of the interoperability work group • Visit the “Past Meetings” section of the wikipagefor the latest interoperability meeting materials and recordings http://wiki.siframework.org/Project+Meeting+Artifacts. • If you have questions, need help or want a quick update please feel free to reach out to any member of the support team • We will have little or no time to review what was covered the week prior in order to make our deadlines and deliverables • FIRST MILESTONE: Completed Use Case by December 4th (with consensus completed by December 11th)

11. Use Case Development Timeline

12. Scoping • Review comments received on wikipage • Address specific areas of scoping: • Data mapping • Language translation • Textual data • Geographic • Additional items

13. User Story Comments • Ronald Cornet (Acad Med Center Amsterdam & Linköping University) • Good story. Some comment, where I don't know whether they are in or out of the scope. Excuse my ignorance in this regard. • 1. Patient identification. Should there be agreement on how that is done? I can walk into an ER and claim to be anyone. Is a passport sufficient? • 2. Request information. Following up on 1, the first issue is what information to provide in the request. Do I ask for information on a patient with national identifier X, or on a patient with certain date of birth, gender, name, etc.? How many options would we need? National IDs aren't common yet, and patients may not know them. • 3. Data content. Shouldn't here also be demographics and allergies? Treatment restrictions (do not resuscitate; no blood transfusion)? • Gerard Freriks (EN13606 Association) • The story is very ambitious. It is the full works of interoperability: • All health data in many domains (both health and lay person/patient) • The patient mandate attached to individual data parts • The goal is laudable but can NEVER be achieved in 12 month's. Even when the appropriate standards are selected. The choice for standards is limited. • There is a suitable and very relevant ISO standard 13606 EHR com designed to flexibly exchange data between EHR systems that includes the Patient Mandate that expresses the Access Control data.Example; A patient summary between two different EHR systems took 2 week to realiseThis standard is easier to implement than CDA based solution, in our experience. • Barry Robson (QEXL Consortium of universities and companies) • It's not so detailed yet. We need a canonical description, a kind of formula for medical events etc. and all the necessary information to be captured and triggered. Hence the semantic philosophy needs to be looked at, soon, since sufficiently expressed, it should not only satisfy the test that the use case represents, but also itself provide an adequately detailed and comprehensive description of the use case in a canonical way, simply more specific and retrospective. The more algorithmic and dynamic aspects of workflow, encryption, disaggregation/shredding, authority codes, requests, permissions and alerts are outlined in the suggestions for a universal exchange language document posted, but we have a prototype as an example that I can describe in considerable when we come to that point of detail. This is to give the members ideas, not to push a product, which will be open source anyway when refined.

14. Data MappingIn/Out of Scope Comments • David Tao (ICSA Labs): • This excludes "data mapping" (code mapping, transcoding) which is a different topic. • I think unit of measure and date/time format translation is essential. Otherwise, if dates/times are misconstrued, it could lead to errors. For example, USA MM/DD/YY format is not comatible with YY/MM/DD format, and a date like "12/09/13" would mean December 9, 2013 in USA, but September 13, 2012 in EU. Weight in KG would be quite different than weight in pounds. Fortunately, I believe these translations would be straightforward and simpler than translation between coding systems such as RxNorm to/from a different EU drug coding system. If data mapping cannot be done reliably and safely (for the patient), at least the original source info should be preserved. However, a risk analysis needs to assess the risk of mis-mapping vs alternatives of not sending the information at all, sending original source only, sending original source plus mappings, flagging mappings that are 1:1 vs those that are not, etc. • Ronald Cornet: • Heading mentions "Translations", whereas I think we agreed that that is about languages.Not exactly sure what the question is. One answer could be : mapping of procedures, diagnoses, allergies, medication. Or: mapping between SNOMED CT and ICD-10, plus a few major procedure systems. • Medication will be important, dealing with trade names and active substances, having mostly national systems (US RxNorm, UK DM+D, Netherlands G-standard to mention a few). • Definitions of data items must be taken into account. Do we mean the same when we say "gender"? Germany just now introduced "gender X", we need to deal with that, but that is a coding issue. • Units of measure should ALWAYS be part of the transferred information, but the number of conversions should be restricted. • Dates should be dealt with, transferred using Universal Time Coordinate (UTC), NOT local time. Clear distinction should be made in the transfer format between day and month, otherwise mix-up between 11/1 being November 1st of January 11th will occur. • Gerard Freriks: • Units of measurement can be dealt with using the UCUM standard.SNOMED can only be used safely in the stable upper parts. Loinc will play a role in lab-tests • A problem will be medical products because there are too many coding systems for drugs and related aspects. It can be solved only by engineering decisions to resort to simple hog level classifications (ATC?)

15. Data MappingIn/Out of Scope Comments CONTINUED • Barry Robson: • We need to co-represent and convert between representations of drug prescriptions, as in the following example tag attribute, but that is fairly straightforward. • Much harder work is to be able to co-represent and convert between the following as well as use the International Classification of Diseases http://www.who.int/classifications/icd/en/ • Procedures - InternationalInternational Classification of Procedures in Medicine (ICPM) and International Classification of Health Interventions (ICHI)[1]ICPC-2 (International Classification of Primary Care, which contains diagnosis codes, reasons for encounter (RFE), and process of care as well as procedure codes)Procedures- North AmericanHealthcare Common Procedure Coding System (including Current Procedural Terminology) (used in United States)ICD-10 Procedure Coding System (ICD-10-PCS) (used in United States)ICD-9-CM Volume 3 (subset of ICD-9-CM) (used in United States)Nursing Interventions Classification (NIC) (used in United States) Nursing Minimum Data Set (NMDS)Nursing Outcomes Classification (NOC)SNOMED (P axis)Current Dental Terminology (CDT)Procedures - EuropeanOPS-301 (adaptation of ICPM used in Germany)OPCS-4.6 (used by the NHS in England) Classification des ActesMédicaux (CCAM) (used in France)NOMESCOGebührenordnungfürärzte (GOÄ) (Germany)Nomenclature des prestations de santé de l'institut national d'assurancemaladieinvalidité (Belgium)TARMED (Switzerland)Classificatie van virrichtingen

16. Data MappingIn/Out of Scope

17. Language TranslationIn/Out of Scope Comments • David Tao: • Re Language Translation. I think it should be in scope for areas of the medical record deemed most useful in transitions of care. There should be at least three areas of prioritization • 1) Areas of Clinical Content • 2) Which EU languages to translate to US English? • 3) US English translated to which EU languages? • Prioritization of languages from EU Language to English or from English to EU language should be based on at least two factors: • 1) Number of patients benefited. http://travel.yahoo.com/p-interests-29848550 indicates that the leading European non-English-speaking countries visited from the USA are France, Italy, Germany and Spain. So translation from French, Italian, German, and Spanish to English appear to be higher priorities. (Not sure whether UK-USA English needs "translation?")In the other direction, the non-English-speaking EU countries generating the most visits to the USA are Germany, France, Italy, Spain, Sweden, Netherlands, Switzerland (source: http://travel.trade.gov/view/m-2012-I-001/index.html) • 2) A modifying factor is whether the translation is necessary and helpful. If nearly everyone (or at least most healthcare providers) already understand English in a EU country, the priority for translation might be lower. For example, don't most Germans speak English? • Of course, there are other considerations such as technical feasibility, availability of tools and resources, etc. I assume that something as ubiquitous as "Google Translate" is not precise enough to be solely used for translation. (Je suppose quequelque chose aussiomniprésentque «Google Translate» n'est pas assez précis pour êtreuniquementutilisé pour la traduction.)

18. Language TranslationIn/Out of Scope Comments CONTINUED • Ronald: • If translation is in scope, it is not only from English to X languages, but also the other way around. I consider it out of scope for now. • Gerard: • Language must be in scope in that sense that it must be possible to facilitate multiple languages in the future. • Barry: • We need to look at this the right way. I’m a big fan of underlying-universal-natural-language theory, a kind of SNOMED but for everyday common speech and topics, BUT the fact remains that well-defined health record and transmission artifacts richly endowed with appropriate attributes and values in an appropriate attribute metadata language can remove the need for extensive translation. Not so very controversial! That is, of course, because the agreed receiving software's can recognize a rather limited subset of attribute names as synonyms in alternative languages, or write and read one as standard “under the hood”. Nonetheless, to remove any risk of ambiguity, they should be linked to RDF-like link extensions that can be built into any attribute value and/or be codes directly associated in the artifact as one or more absolute definition codes like SNOMED. In the example below, they are WHO ICD codes and national and international procedure codes. For example, in our approach we would have one piece something like the following hand-crafted tag, doubtless needing to be refined and enhanced (I emailed a more carefully crafted prescription tag some weeks ago).

19. Language TranslationIn/Out of Scope • Should we start with just a sample set of 2 or 3 languages? • Should we pick one universal language (English) and another language to demonstrate translation both ways?

20. Areas of TranslationIn/Out of Scope • Question: Based on the comments on the wiki page, the following areas have been included for discussion today. Should translation be limited to specific areas of clinical content? • chief complaint • reason for visit • hospital course • discharge summary • patient instructions • history of present illness • Question: Are there other areas of clinical content that must be added to this list?

21. Textual DataIn/Out of Scope • David Tao: • But where Textual Data is used, the original should be preserved as is. • Ronald: • As little as possible. Other than demographic information of the patient, (name, address) preferably none. • Gerard: • Something is better than nothing. • A PDF to read is better than noting. • Always a textual representation is needed next to structured data. • Barry: • Despite my above comments, natural and everyday common language text will at some points be inevitable. We will, however, need analogous codes and hub language to make it unambiguous. I’ll argue for, and with its inventor provide later, some examples of artifacts where the codes are Kodaxil. It is a universal underlying natural-like language (crudely put, a kind of computer-science formal Esperanto) that can sit behind a Web page written in any of several major languages.

22. Textual DataIn/Out of Scope

23. GeographicIn/Out of Scope • Is it the intention of the EU effort to implement the same standards that will be used in EU to US exchanges?

24. Additional ItemsIn/Out of Scope

25. Assumptions • Assuming the ability to comply with legal and regulatory regimes of the EU and US

26. Actors and Roles

27. Use Case Development Timeline

28. Next Steps • Prepare for out next meeting • Review • Send in your bios • Interoperability of EHR Work Group will continue to meet every Wednesday from 10:00am - 11:00am (ET)/4:00pm - 5:00 pm (CEST) • During the week of November 25thwe will meet on Monday, November 25th from 10:00am - 11:00am (ET)/3:00pm - 4:00pm (GMT)/4:00pm - 5:00pm (CET)/ 5:00pm - 6:00pm (EET).

29. Interoperability Support Leads • US Point of Contacts • Mera Choi: Mera.Choi@hhs.gov • Jamie Parker: jamie.parker@esacinc.com • GayathriJayawardena, gayathri.jayawardena@esacinc.com • Amanda Merrill, amanda.merrill@accenturefederal.com • Emily Mitchell, emily.d.mitchell@accenturefederal.com • Mark Roche, mrochemd@gmail.com • Virginia Riehl, virginia.riehl@verizon.net • EU Point of Contacts • Benoit Abeloos, Benoit.ABELOOS@ec.europa.eu • Frank Cunningham, frank.cunningham@ec.europa.eu • Catherine Chronaki, chronaki@gmail.com

30. Questions

31. Resources • EU US Wiki Homepage • http://wiki.siframework.org/EU-US+eHealth+Cooperation+Initiative • Join the Initiative • http://wiki.siframework.org/EU-US+MOU+Roadmap+Project+Sign+Up • Reference Materials • http://wiki.siframework.org/EU-US+MOU+Roadmap+Project+Reference+Materials